Today’s D-Blog week topic is simple: What I wish you would know. The idea is to open up about something about life with diabetes on board that I don’t usually share. Here goes.
I am well known in the diabetes world and so is my amazing daughter. We’ve spoken in local and national venues, we’ve both written for huge publications about life with diabetes and we’ve both appeared on all kinds of big-time television shows. Of course I have this blog, and I’ve written books on the subject.
I believe we are known as a positive force. We don’t blubber and we don’t whine. My goal for Lauren’s entire life with diabetes has been exactly what this blog is called: living life despite diabetes. I’m honest when I speak about the challenges, but I do it with humor and I like to laugh. Lauren is the same way.
We never wake up moaning about the cards we’ve been dealt, and when we speak with other families, we talk about the amazing life a person can lead even with diabetes along.
So here’s the thing I want you to know (and I want you to forgive me for going off my track of the usually total positivity here. Just hear me out, tuck it way in the back of your mind, and then go back to hearing my usual upbeat tone):
It’s absolutely soul wrenching to raise a child with an incurable disease.
When a child comes into your life, be it through birth, adoption, becoming an auntie or uncle, becoming a godparent or just welcoming the child of a beloved friend, you hold them in your arms and dream of all they can and will be. You picture bike rides. And birthday parties. If you are me you decide exactly what kind of skis you’ll start them on. You vow to keep them happy and safe and comfortable and well-behaved and strong.
This is what I did. And even though I did it while holding her in an intensive care unit, I can honestly say that never, not once, did I imagine that every single moment of every single day of her life would be impacted by disease.
And yet, here we are. To say that Lauren has been through a yeoman’s share of challenges is an understatement. She’s pricked her finger to draw blood more than, oh, I’d say 50,000 times at this point. (Sometimes a fingertip or two just spontaneously combusts, oozing blood all over the place. At which point we do our best Nigel Tufnel voice and say “People’s fingers spontaneously combust all the time!” ) She’s inserted her own pump catheter thousands of times (even though she was a little girl when she started on the pump, she was smart enough to realize she’s better at that stuff than her mom. Ha!) She’s been too high to close out an vital tennis match, and too low to focus on a test she had coming up. She’s been a hospital inpatient many, many times. She went through a phase of rebellion and denial of her disease that challenged our entire family, but her the most. She’s been discriminated against and she’s been accused of “playing the diabetes card,” something she would never, ever do. She’s buried friends who did not win their diabetes battle. She’s experienced life at a level most never, ever will.
And as her mother, I’ve had to say, over and over and over to her, ‘It’s fine. It will work out. We can outshine this blasted thing.” I’ve had to say it when I really just wanted to scream “Enough!” And she’s had to accept that even when she wanted to shout “Wrong! I’m done with this!” And that, quite honestly, chips away at a mother’s heart.
But here’s the thing: I cannot even go further than this without turning to the positive. Because diabetes is not beating us. Lauren is a vibrant, interesting, smart and funny, funny young woman (if I might say so myself). Throughout our life with all this along, we’ve skied many mountains, traveled to cool places, met amazing people, argued like all moms and teens do, bonded over a Ziggys ice cream, spent too much money at Vineyard Vines, and more.
Lauren has gone off the college in DC, been president of her student council, earned great grades, traveled on her own to many places, overcome her burnout to rock diabetes (most of the time), met a great, great boyfriend, had wild times at Frat parties, stayed close to her many, many good friends and looked good doing it. She savors every second of life. Yes, she’s over the moon this week about a new blood glucose meter, but she’s just as pumped about seeing all her home town friends again. She’s living her life. Despite diabetes.
So I shared with you a secret: that way, way down there is heartbreak. But what I want you to remember is this: Layered on top of all that, thick, strong and beautiful, is hope and determination.
And that’s what I want you to know.